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Coeliac disease in children

  • Coeliac disease affects 1 in 100 children and up to 3 in 100 in some other European countries.
  • Most children remain undiagnosed.
  • Symptoms include diarrhoea and other gut symptoms, faltering growth or a change in growth pattern, irritability and a bloated tummy.
  • In undiagnosed, untreated coeliac disease there is a greater risk of complications including impaired weight gain and growth problems, delayed puberty, iron deficiency anaemia, chronic fatigue and osteoporosis.
  • A gluten free diet should only begin once a child is formally diagnosed with coeliac disease by a healthcare professional.
  • Download ESPGHAN and AOECS' infographic and manifesto for more information.

Coeliac disease in children is common, affecting 1 in 100 children in most of Europe, and as many as 3 in 100 in some countries. However most children have not yet been diagnosed. Untreated coeliac disease can result in serious health complications like impaired weight gain and growth problems, delayed puberty, iron deficiency anaemia, chronic fatigue and osteoporosis, so it's crucial to get your child tested if they show any of the symptoms below. 

The classic symptoms of coeliac disease in children include:

  • bloated tummy
  • irritability
  • diarrhoea and other gut symptoms
  • faltering growth or a change in growth pattern.

The first step in diagnosis is to discuss your concerns with your child's GP. Do not remove gluten from their diet until they are diagnosed by a healthcare professional.

Diagnosing children

Guidelines published by the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and Coeliac UK recommend that children who have symptoms of coeliac disease and a blood test that shows high levels of antibodies may not need to have a biopsy to be diagnosed with the disease. Instead, a second antibody blood test followed by a genetic test can be used to confirm the diagnosis. Your child’s GP can refer them to a paediatric gastroenterologist to make sure the correct tests are carried out.

These guidelines reflect the improved accuracy and reliability of the antibody blood tests. The waiting time for a biopsy may be several weeks and can be a factor in delaying diagnosis and starting treatment with the gluten free diet. If there is no need for biopsy, the diagnosis process is much quicker, which is good news for the child.

Follow up for children

The BSPGHAN recommend ongoing monitoring by an experienced paediatric dietitian and paediatric gastroenterologist. Children should be followed up six to 12 months after diagnosis followed by a yearly check up after this. This should include an antibody blood test every year or less often. Another biopsy may be offered but is not carried out routinely.

Children should also have their height and weight checked to monitor their growth and development.

However, if you or your child’s symptoms have not improved or have got worse since following the gluten free diet, speak to your healthcare team. 

Managing your child's coeliac disease and ensuring they receive the appropriate follow up care can be overwhelming. Check out our interviews with top coeliac disease experts below for tips on what care to expect.

Find out more 

For a more in depth look at coeliac disease in children, watch our Q&A videos with paediatric gastroenterologist Dr Peter Gillett below, or check out our YouTube channel for more. 

  

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